For people living with SMA, stabilising the disease and maintaining motor function represents major progress.1 In fact, without intervention, it is inevitable that people living with Type II/III SMA will see progression of their disease over time.2
The characters shown are real patients and the required consent to use their stories has been obtained from the patients and families. Photographs are for illustrative purposes only.
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VOICES FROM PEOPLE LIVING WITH SMA
Once thought to be primarily a childhood disease, SMA can be diagnosed in adolescents and adults.3
Meet Michel and Samuel and put yourself in the shoes of adults living with SMA or their family.
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A CAREGIVER’S PERSPECTIVE:
“I wish I had pushed harder”
A caregiver of a young adult living with SMA and his family’s journey.
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“If I would have known the disease, I would have done differently one thing: get back to the doctor, get back to the doctor like every five minutes!Because there was something wrong, for sure. … see a specialist, don’t wait, because the more you wait, the more regression they have. It can’t come back.”by Michel
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A PATIENT’S PERSPECTIVE:
“I’m Normal. Just Different”
A young adult living with SMA, who was diagnosed as an adolescent and his perspective on life with SMA.
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“When I got the diagnosis, I was 16, going on my 17, I took it pretty good because it was putting a name on what I had.” by Samuel
PERSPECTIVES FROM PEOPLE LIVING WITH SMA
Ongoing research has transformed our understanding of the mechanisms underlying SMA – progression is no longer inevitable.4-7
Specialist neurologists now have access to care options with the potential to stabilise your patient’s disease and help preserve the functions so important to them.5,6,7
You can make the difference.
It is important that you talk with your patient, about the benefits of a specialist neurologist referral.
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For people living with SMA, care outcomes today are better than they have ever been.
The characters shown are real patients and the required consent to use their stories has been obtained from the patients and families. Photographs are for illustrative purposes only.
References
1. Kaufmann P, et al. Prospective cohort study of spinal muscular atrophy types 2 and 3. Neurol 2012;79:1889-1897.
2. Rouault F, et al. Disease impact on general well-being and therapeutic expectations of European Type II and Type III spinal muscular atrophy patients. Neuromuscul Disord 2017;27(5):428-438.
4. Bharucha-Goebel D, Kaufmann P. Treatment Advances in Spinal Muscular Atrophy. Curr Neurol Neurosci Rep 2017;17(11):91.
5. Mercuri E, et al. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord 2018;28(2):103-115.
6. Finkel R, et al. Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord 2018;28(3):197-207.
7. Darras BT, Chiriboga CA, Iannaccone ST, et al. Nusinersen in later-onset spinal muscular atrophy. Neurology. 2019;92(21):e2492-e2506.
